And for that, I am truly sorry. The whole reason I began to blog, as I have mentioned in at least one, if not more of my posts, was to hopefully reach someone who was struggling whether it be with RSD, some other type of chronic illness or just with life. I was blown away to hear from so many people tell me how it helped them and I wanted to continue to do so but then life got crazy and blogging took a back seat. I am sorry to those who have asked me to continue and have yet to see a post from me. I did promise to continue, so here I am. Better late than never, right?
My RSD has spread once again. I now have it in both arms, starting in my shoulders making its' way down to the tips of my fingers. From there it travels through my back, down my buttocks (is there a more appropriate word?) and then skips my legs but unfortunately, didn't leave me completely untouched in my lower body as it's in my left foot, the originating point of this nasty little nuisance. I was pretty depressed when I learned of its' spreading but at the same time, wasn't too surprised as this disease is notorious for kind of taking over one's body. Some luck out and only have it in one limb, but many, like myself, have their regular body seized by this disease as it slowly makes a home for itself in a new body part. This disease is malicious and unpredictable. It is my worst enemy and I have to share a home with it. It's ruined relationships and has even toyed with my psyche from time to time. It has limited my ability to perform day-to-day tasks. Shoot, it has affected my job so much that it's on the line as we speak. I have my own personal pharmacy that I take on a daily basis just to try to limit some of the pain I experience. Pharmaceutical companies must love me because of the number of pills and the number of medications I am given each month. I resent it and everything about it, but I won't give it the satisfaction of letting me give up on everything. I will keep my job, I will attempt to mend broken relationships; I will remain positive and will continue to reach out to others who struggle in hopes to help them realize they can deal with hardship and it does not have to define them.
A lot has gone on since I last posted. While I'm not quite ready to share details of everything that has occurred, I have experienced many hardships and I've reached my breaking point because of them. My list of friends has shrunk quite drastically, although it's doubtful I would have leaned on them during these times anyways simply because I have done so countless times before and I can imagine it has exhausted many to the point of needing to end the friendship. Just to catch you up on some things, although I am sure many of you figured it out by my postings on Facebook: we moved into a new house which I love, the kids finished up the school year, Cameron graduating 1st grade, Ashlyn graduating kindergarten and my stepdaughter Aspen graduating 3rd, and then there is the most exciting change which is the reuniting that took place between my husband and me. Marriage is a sacred union to both of us although during our separation, we both had conceded that it was not going to work out between us. We led separate lives, lived in separate cities. We only spoke when it was regarding the kids or him coming to visit the kids. It was sad to see the damage in our family and how broken we were. The kids had adjusted ok to the separation, but it didn't mean they wanted it to remain that way. Come March, things were changing between us. Tensions had eased, pride was put aside and the decision was made to try and work things out. The process was long and tedious. At times, I thought the pain would kill me and I didn't think we'd make it out the other side. But I soon realized that both of us had made radical changes in our lives and we weren't the same people we were when we separated. If we were, there wasn't a chance in hell our marriage would remain in tact. Slowly, the healing process began between us and we shared a new way of communicating, loving each other, respecting each other and embracing our differences instead of fighting over them. It's been five months since our reconciliation, but I can say with confidence that we are going to make it. Ask me 9 months ago if we would and I would have given you a completely different answer full of mean remarks and spiteful comments. I think God timed it this way so we wouldn't face the challenges and hardships that we are currently experiencing, alone. And the things we are experiencing right now would tear many couples apart without a doubt. Instead, it has brought us closer together, given us a chance to lean on each other and strengthen our bond even more. If you knew us well the last few years, you'd know we had an unhealthy and complicated relationship. I guess that's what comes with marrying each other after dating for six months, but we're still standing and we are stronger than I ever thought possible. The power of forgiveness and of humility are a strong thing. They are something that in the past, I did not give much thought to, nor did I ever consider doing. Sometimes I feel several years were wasted simply because of our pride, but I'd rather focus on shaping my future than trying to change the past or live in a "what if" world. I can only attribute this change in our marriage and the miracle of our reconciliation, to God.
So for those of you who are going through an impossibly hard time in your life right now, find someone to lean on. If you're married, lean on your spouse and let them help you through it. Instead of getting angry with them or letting this hard time tear you apart, allow it to bring you closer together. Remember that they are going through something too and you took a vow that included "for better or worse". The worse portion is difficult to get through, but not impossible. And if Adam and I can make it, then trust me, ANYONE can. We were seconds from a divorce and are now best friends, teammates and share a love and bond stronger than we could have ever imagined. There are no more fights, no more yelling. All that has been replaced by love, good communication and understanding. My RSD always makes for a challenge in any relationship I have, whether it be a friend, family or my marriage. But, it doesn't define me and your circumstance do not have to define you. It does not have to negatively impact your relationships. It can if you allow it, but it can also be something that makes your relationships stronger. I challenge you to start viewing your hardships as opportunities to make your relationships better instead of allowing it to put a strain on them. Find ways to improve your relationships because in the end, you are going to want people standing by you instead of being alone.
Until next time...and I promise, there will be a next time.
Thursday, August 15, 2013
Tuesday, January 1, 2013
Exciting things are coming - edited and updated!
First off, I hope everyone had a magical Christmas and are looking forward to a wonderful New Year! I ask that you read this entire post as there is some very important information and some changes to the blog that I am going to explain. For those of you who regularly follow my blog (can't believe I actually have people who do), I am sorry for the extended gap in time since my last post. I didn't realize it had been almost month since I last said anything but quite honestly, I wasn't in the most positive of places so I needed to pull myself out of that funk and find my peace again. Dealing with the spread of my RSD, the pain, the craziness that is Christmas and all the other chaos of my life proved more difficult than I thought. I can easily throw on a smile and say I'm doing ok to those who ask, but inside, I was struggling.
The blog has taken off like I never expected it would. I have heard from family members, friends, old friends whom I haven't spoken to in ages and strangers. Many of those I have heard from have asked that I add a donation button to my blog so they may help with medical bills or treatments that I haven't been able to afford. I wanted to thank all of those who were kind enough to even think of doing such a thing, but after careful consideration, I have determined that it is not in the spirit of my blog to ask for personal donations. While I do have a link on my page for this (thank you to the friend who set this up), I will be moving it to the bottom of my page as to not call attention to it (I only say this so you don't confuse which one is to donate to the new organization. The donation button for the organization remains at the top of my page)and will ask my friend to remove it (sorry, I'm not tech savvy enough to do so myself). Please understand I am not belittling those who do have blogs for personal fundraisers. Blogs are for each individual to use as they please and some may use their blog as a means to raise money for their families, for medical bills, for adoption, etc.
The purpose of this blog is to share my journey, raise RSD awareness and to help others. I am excited to announce, I am in the process of developing a non-profit organization (working on obtaining an LLC as we speak) to help those with RSD! After meeting so many wonderful people who share this disease and through my own experiences, I have learned there are many that struggle to pay for even the basic care of this disease such as doctor visits, medications and other necessities. Some of the treatments proved to be most successful such as nerve blocks, injections, spinal cord simulators, pain pumps and Ketamine infusions are out of reach for most RSD patients due to the cost. Unfortunately, some of the other treatments which have proven helpful are still labeled as "experimental" even though many have used these treatments have since experienced lessened pain and in some cases, put it into remission completely. Any treatments that are labeled experimental are not covered by insurance and typically, patients are required to pay the full cost of the treatment upfront. It is my belief that many of the treatments have not had the experimental label removed because there is not enough funding to complete the necessary trials and research for RSD.
Living with this disease is not living. What may be easy to you, like getting out of bed in the morning, getting dressed...all that is a huge chore for us. Without proper medical care and the right treatments, RSDers miss out on life. I don't know about you, but I'm not ok with that and I am forming this foundation to change that. Once it is up and running in its' full capacity, my organization (still working on the name) will allow people to apply for grants to assist in paying for their treatment. Everyone deserves a chance to live a life as close to normal as possible and if my organization can help someone pay for the medication or treatment that will allow them to do that, then I consider it a success. I will talk more about it in my next post, but in the meantime, I just wanted to let everyone know that if you use the donate button at the top of the page, all of those proceeds will go towards this new organization. You will be helping someone possibly get their life back which will not only benefit them, but everyone around them. Thank you for considering helping someone. All donations, small or large and more than appreciated!
xoxo
The blog has taken off like I never expected it would. I have heard from family members, friends, old friends whom I haven't spoken to in ages and strangers. Many of those I have heard from have asked that I add a donation button to my blog so they may help with medical bills or treatments that I haven't been able to afford. I wanted to thank all of those who were kind enough to even think of doing such a thing, but after careful consideration, I have determined that it is not in the spirit of my blog to ask for personal donations. While I do have a link on my page for this (thank you to the friend who set this up), I will be moving it to the bottom of my page as to not call attention to it (I only say this so you don't confuse which one is to donate to the new organization. The donation button for the organization remains at the top of my page)and will ask my friend to remove it (sorry, I'm not tech savvy enough to do so myself). Please understand I am not belittling those who do have blogs for personal fundraisers. Blogs are for each individual to use as they please and some may use their blog as a means to raise money for their families, for medical bills, for adoption, etc.
The purpose of this blog is to share my journey, raise RSD awareness and to help others. I am excited to announce, I am in the process of developing a non-profit organization (working on obtaining an LLC as we speak) to help those with RSD! After meeting so many wonderful people who share this disease and through my own experiences, I have learned there are many that struggle to pay for even the basic care of this disease such as doctor visits, medications and other necessities. Some of the treatments proved to be most successful such as nerve blocks, injections, spinal cord simulators, pain pumps and Ketamine infusions are out of reach for most RSD patients due to the cost. Unfortunately, some of the other treatments which have proven helpful are still labeled as "experimental" even though many have used these treatments have since experienced lessened pain and in some cases, put it into remission completely. Any treatments that are labeled experimental are not covered by insurance and typically, patients are required to pay the full cost of the treatment upfront. It is my belief that many of the treatments have not had the experimental label removed because there is not enough funding to complete the necessary trials and research for RSD.
Living with this disease is not living. What may be easy to you, like getting out of bed in the morning, getting dressed...all that is a huge chore for us. Without proper medical care and the right treatments, RSDers miss out on life. I don't know about you, but I'm not ok with that and I am forming this foundation to change that. Once it is up and running in its' full capacity, my organization (still working on the name) will allow people to apply for grants to assist in paying for their treatment. Everyone deserves a chance to live a life as close to normal as possible and if my organization can help someone pay for the medication or treatment that will allow them to do that, then I consider it a success. I will talk more about it in my next post, but in the meantime, I just wanted to let everyone know that if you use the donate button at the top of the page, all of those proceeds will go towards this new organization. You will be helping someone possibly get their life back which will not only benefit them, but everyone around them. Thank you for considering helping someone. All donations, small or large and more than appreciated!
xoxo
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